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    • #11842

      Hello Everyone!

      I know I have asked this before, specifically when the forums were first launched a couple of months ago. That said, we’ve had many more patients, caregivers, friends, family, advocates and researchers join us on the forums since then. Therefore, I wanted to ask two very personal but incredibly helpful questions from those of you who so kindly give your time and energy on this forum to help others. Those questions are:

      1. What is one piece of advice that you would give to a patient newly diagnosed with IPF? Perhaps it is a piece of advice that someone shared with you and you cherished it, or maybe it is something you have learnt that you wish someone would have told you.

      2. What is one piece of advice that you would share with a caregiver of someone newly          diagnosed? The caregiver role is exceptionally difficult, and we as patients are so very grateful for all that our caregivers do for us but we acknowledge that it is hard work.

      Please share your answers to these questions for those who are new to our forums, and who may be seeking some advice or words of wisdom for dealing with their newly diagnosed disease (or that of their loved one).

      Thank you all in advance for being so giving with your time and energy by contributing to these forums! I look forward to reading your advice again, or for the first time, as I am confident they will still be helpful for me.

      Warm regards,
      Charlene.

    • #11864
      Dianne
      Participant

      I wish I were able to give advice but i am newly diagnosed 12/2017.  The question I have is what are the symptoms or side effects of PF other than SOB and the inevitable cough?  I am thrilled I found this site as I am just beginning to break my denial and reach out to others and gain knowledge about this disease.  Thank You.

      • #11886

        Hi Dianne,

        Thank you so much for writing us! No worries about not being able to provide advice yet, eventually I think you will be able to and know that will help others who are newly diagnosed.

        What I am learning is that there are some “classic/standard” (for lack of a better word) side effects of PF, but that there are also some that are unexpected. Typically my side effects are SOB episodes and dry cough, as you say, but I have also recently started to experience headaches and extreme fatigue. I am not sure yet if my disease has progressed and this is a reason for my additional symptoms, but it is certainly something I have noticed more frequently. Another thing I am noticing more often is joint/muscle/nerve pain and I’ve written a few posts about this, and some say they can relate to this and have those symptoms as well, whereas others don’t. I think one of my pieces of advice for newly diagnosed patients is to be aware that this disease is very individualized. Meaning, it might not manifest itself/develop the same in any two people….

        I am really glad you found this site as well, and please feel free to reach out to us any time. We’re all in this together, and certainly remember what it was like to be newly diagnosed. Hang in there.

        Warm regards,
        Charlene.

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